- 09-06-2013, 03:36 PM
First let me say that this is not related to Test or hormones. I am seeking advice on how to deal with doctors about a problem I have.
In May of this year I was in the gym doing ab work. I felt a sharp pain in my right side just below the ribs. I thought I was just overdoing it so I stopped the crunches. Didn't think more about it.
That night I woke about 2am and my abdomen was on fire. It felt like nothing I've felt before. A tingling, numb, burning sensation all though my abdomen. It kind of freaked me out so I got out of bed. I was a little disoriented and also noticed that my hands and feet felt like they were asleep.. Those tingles you get when they start waking up. I took a hot shower and walked around a bit and it seemed to ease the burning but not the tingling in my hands. I also noticed that it was hard to do simple tasks that you usually don't think about.. sort of a groggy lack of focus.
This is all taking place on an offshore drilling rig about 60km off the southern tip of South Africa so going to the emergency room is a major undertaking.
The next day I went to the medic. She checked me out and said I was OK but if it happened again to come see her even if I had to wake her up.
Well that night I was laying in bed and I felt the burning start. I rolled onto my left side and I felt something go from my right side to my left side and leave a burning trail behind. It formed a pool in my left side and I immediately sat up in bed. I could feel it go down toward my groin after I sat up. This made me think it's some kind of fluid. I slept setting up that night, what little sleep I could get.
The next day I went to the medic again. She did some tests and said she couldn't find anything. We talked and I remembered that my gall bladder had been removed two years prior to that and it was in the same spot that this burning liquid is coming from. She said it might be my appendix also.
Next night.. I woke shaking uncontrollably. I took a hot shower and was still shaking so I went to the medic. She called the helicopter and they evac'd me to the emergency room in George. There they did blood and urine tests and said I did not have any infection and that I wasn't going to die. They did an ultrasound of my abdomen and said everything looks great. I asked the doctor what could be causing the burning and she said it could be acid reflux or Hiatal hernia. She gave me Nexium and released me from the hospital. I returned to work for my last few days and then returned to the US for my 4 weeks home.
When I got home I went to see a Gastroenterologist. He did an EGD (Endoscope check out of the stomach, esophagus and small intestine) and also a Colonoscopy. He said everything looked great, prescribed me some Dexilant (for acid reflux, which I've had since the mid 90's) and sent me home.
Anyway... before this becomes a book.
He referred me to a Digestive Specialist who also did an Endoscope check out of my stomach etc.. he also did an ultrasound of my bile duct. Nothing was found.
By this time I have read everything I can about my problem and also did some experiments. I found that it is triggered when I eat meat or fatty products.
If I eat a piece of meat, about 30 minutes later I start to feel a tenderness in the upper right abdomen followed by what feels to me to be a fluid leaking out. If I'm sitting it goes down toward my crotch. If I'm laying down it feels as if it pools in my back area. If I'm on one side it goes to that side. After I start to feel the burning about 5 minutes later I start to feel the numb, tingling feeling in my hands. It will sometimes get to the point of sharp pin pricks and burning in my joints. My feet start to swell and my skin feels like it's on fire. This can last for days.
I visited the digestive specialist again and told him that it's getting worse. He suggested a HIDA scan (radioactive dye injected that goes to the liver/bile duct. I went straight away to the clinic to have it done. I called them and asked if I should eat some meat to get the burning started. They said "If we want you to eat something, we'll tell you". Three weeks later I was able to get back in the see the digestive specialist to go over the HIDA scan results. I commented that I wasn't feeling the burning at the time because I had been eating only fruits and vegetables for the weeks prior to that. He mumbled something and said let's do a "Fatty Meal Stimulated Liver Ultra Sound" Ok the fatty meal part sounded good but why an ultrasound??? Why not do a "Fatty Meal Stimulated HIDA scan?".
So I've been to several more doctors in search of someone who will do the right tests in a timely manner. The surgeon who did the gall bladder removal said I should get an ERCP. None of the doctors I talked with will do an ERCP.
I suspect a bile leak from my cystic stump (the little tube that connects the bile duct to the gall bladder). Possibly I pulled the clips off the end or somehow ripped the tube during the exercise. Now it's September. Nothing has been done. The proper tests are not being preformed and I'm just getting worse. I've completely cut out all fat from my diet and I can go for about a week between the burning.
It used to take me out of action for a few days but I read that bile salts in the blood can cause electrolyte problems. Now when I feel the burning I drink a liter of pedialyte and within 30 minutes the tingling in my hands, foggy thinking and pin pricks are reduced greatly. I don't have two or three days where I don't know night from day.
The last visit to the Digestive specialist netted "Here take this and come back in two weeks if you're not feeling better" I went to get it filled and it turns out to be an anti depressant. What an insult.
How to go about finding a doctor who will take the time to go through the correct tests and get to the bottom of this?
- 09-06-2013, 03:52 PM
I recently had/have a medical problem come up and the doctors I spoke to couldn't find anything wrong with me either. It seems every time I go to the doctor, it just ends up being a waste of time and money. Sorry I can't be of more help, but I do understand your frustration. I've practically given up on doctors myself.S.N.S. Rep
- 09-06-2013, 06:50 PM
it just ends up being a waste of time and money
Just to see that Digestive Specialist is $500 per office visit and I swear he has never talked to me for more than 3 minutes.
Not counting the three CT scans, HIDA scan, Liver ultra sound (what is the reasoning behind that?), Bile duct ultrasound, MRCP and multiple blood tests (Why they give the same basic test over and over again???).
It''s very frustrating and I need to get back to work soon before the savings runs out.
09-06-2013, 07:00 PM
Yep, they wanted to come back for a follow up. I was like, yeah right so you can charge me more money and waste more of my time?. No thanks.
09-06-2013, 07:33 PM
Hey man I'm sorry to hear about your experience with medical incompetence. I know exactly where you're coming from. Been there myself and it's not fun. The sad fact is the medical field is just like any other profession. Maybe 10% of them are truly passionate about their job and actually listen to their patients symptoms and respond accordingly to get them healthy as quick as possible. The rest were scraping by with poor grades and just barely getting into the field, and now they're the smug bastards who walk into the room and think they already know everything before you even start listing your symptoms. You start telling them what you think is wrong and they nod without looking up from their cliipboard once, as they've already decided what "tests" they want to run next.
Your questions are valid. Why do they keep running a bunch of the same tests and getting you back in for follow ups? Because the entire goal is to get you in the office, and then shuttle you out as quickly as possible with a new reason to come back again to keep the money flowing. I'm not saying all doctors are like this but it's often very difficult to find the ones who aren't. Next time tell them exactly what you think is wrong and force them to explain why you aren't correct. A lot of people make the mistake of going in the doctors and not challenging anything they say as if they're the gods of health. They work for you... it's ok to get angry and pissed if they aren't doing their jobs. Prescribing an antidepressant... lol wow. I'd never go back to that doctor again, and I definitely wouldn't start taking the antidepressant. Those will probably mess you up worse in the long run and obviously will do nothing for your actual problem.
Your surgeon suggested a specific test, the ERCP, so I would focus on finding a place that does that. It sounds like you may be visiting some smaller practices that don't have the facilities to run that type of test. I would maybe ask your surgeon to recommend a place to go, or maybe even call your insurance company and perhaps they will help get you pointed in the right direction. I don't even know what an ERCP is, but as a general rule the most exotic tests are available at bigger facilities in larger cities. Start calling places like that in your nearest big city and maybe you'll have better luck. Hope you get better soon bro.
09-06-2013, 08:40 PM
You went to the same doctor I did? You described him perfectly. Arrogant and smug. Never looked up from his computer. Started out saying I needed an ultrasound of my pancreas then changed it to, you need and ERCP (they plug the bile duct and pump a fluid in, watch it on a fluoroscope to see where the leak is) All done with endoscope. Takes about 20 minutes and you walk out. He said if he finds a leak he'll put a stint in while he's in there. Just like the stint they put in heart patients. Well.. i got to the clinic and what do you know.. They aren't going to do the ERCP. They are going to do the ultrasound of my pancreas and bile duct. That procedure is called for when you have a suspected blockage. Not a leak!Hey man I'm sorry to hear about your experience with medical incompetence. I know exactly where you're coming from. Been there myself and it's not fun. The sad fact is the medical field is just like any other profession. Maybe 10% of them are truly passionate about their job and actually listen to their patients symptoms and respond accordingly to get them healthy as quick as possible. The rest were scraping by with poor grades and just barely getting into the field, and now they're the smug bastards who walk into the room and think they already know everything before you even start listing your symptoms. You start telling them what you think is wrong and they nod without looking up from their cliipboard once, as they've already decided what "tests" they want to run next.
Anyway.. You hit the nail on the head with the doctor. Educated beyond his intelligence level, lacks a drop of common sense.
Talked to the surgeon and he recommended the Dr. I was already seeing, said he had a good reputation. Called the insurance to get another doctor. Called her up.. First available appointment is October 20!
Talked to another Gastroenterologist and he recommended an ERCP also. Gave me the name of a Dr. I went to him two days later. He looked at my information (I have a big file by now) and refused to even look at me. Said "Good luck".
Back to my search on Monday.
09-07-2013, 05:18 AM
09-07-2013, 06:01 AM
09-07-2013, 08:06 PM
Basically they think it's stress related and possibly neurological. No idea what gives them that idea. I mean the doctors who say it's neurological have not preformed extensive tests to come to that conclusion. Just look at me and see it in my eyes I guess.So at this point they basically think you're crazy? That's messed up
Someone has to pay for it. Luckily I have Blue Cross Blue Shield insurance and they haven't said a word. Yes I have to pay a deductible of $500 per year and also a co-pay for each doctor visit but it's only like $40 or so. An MRI it was $210. For an office visit to the Digestive specialist it's $100 (20% of the visit fee).Do you have to pay all medical bills there in the U.S.?
Not sure what I ate yesterday but I woke up about 5am with my abdomen on fire, hands numb, lips numb, feet swollen and feeling like crap. I would go to the emergency room but what are they going to do? Check my heart and say "you're fine, get out"??
Two doctors I visited laughed in my face when I told them I thought I had a bile leak. They both said "If you have a bile leak you would be dead by now".
Being in IT and highly computer literate I pulled up the good ole Google search.
Yes if my bile duct was cut as it is in many gall bladder removals (about 12% cut the wrong tube!) and all the bile that my liver produces, which can be 500 to 800ml per day, was being dumped into my abdomen I can understand that I would be dead. But what if the cystic stump has a rip in the end of it and is only letting bile into my abdomen under certain conditions such as laying down or eating meat (which triggers bile production in a big way)? What if I was only getting a few spoon fulls into my abdomen? Enough to give me a problem but not enough to kill me.
I've read many such cases in medical papers but you don't dare bring that up to a doctor. OH my god.. you trust the internet? Well when it's a medical paper stored in a medical repository I might actually believe it.
I went though my life thinking we had the best medical system in the world. After this I'm starting to doubt that.
I had stopped my TRT injections when this started.. Yesterday I took my first shot again. We'll see how it goes.
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